To add to many of their exciting online projects this year, FindaCure has launched a new online portal to give patients, advocates and organizations a chance to connect in an even more direct medium.

The portal is a central hub of information and training for rare disease advocates, patient groups, and charities. It aims to encourage and empower the formation of new patient groups, enable existing patient organisations to grow and provide better support, and build the rare disease community by facilitating communication between users.

Their courses contain written guides, animated videos, presentations, and webinars to explain topics such as setting up a new organisation, good communications, fundraising, partnering with researchers and pharma, and supporting clinical trials. You can also connect to fellow users to ask questions and share your own knowledge in dedicated forum.

Sign up for free today.

1 thought on “FindaCure Launches New Online Portal”

  1. Annie Achee says:

    Join the National Leiomyosarcoma Foundation for its annual Patient Educational Symposia across the USA. Oct 8th – St. Louis with Dr. Brian Van Tine. Next year – four more programs lined up. Call Annie at 303 783-0924 to find out more about Leiomyosarcoma Support from the Foundation and the research projects it funds.
    The Website site is: It is currently being revised but the existing one has helpful information to share.
    Leiomyosarcoma is a rare sarcoma that hits smooth muscle, and connective tissue – 65% live to 5 years. 16,000 diagnosed with sarcoma and 13 -16% of those are Leiomyosarcoma patients.

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